They don't move fast enough. I am afraid that their "I have seen this before" mentality is going to hurt my son if it has not definitely done so already. He de-saturated on the ventilator and the nurse was too calm. He went all the way down to 77 before she did something - when he went to 81 on the other side they called a rapid response. He is back to stable again and moving and breathing but I am so scared. Limiting oxygen to the brain can cause brain injury. That is my ace in the hole all this time, his scans keep saying he is ok. I want to keep him that way. I want his brain to stay neatly tucked in his skull so once the swelling is down he is back to being Jason. No matter how much rehab he will need to walk or talk again - when he does - he will BE JASON.
If shit like this keeps happening he might not be.
I am not as educated as they are. The hypocritical cool nonchalance terrifies me. I don't know who is right. I don't know who is wrong. My heart races and I burst into tears because that is what the bells and whistles tell me to do. They mean something is wrong and THEY have to act.
But some silence the alarm. Some get the doctor. Some quote what the "doctor" said previously, (the "doctor who is actually a resident), just like the one who told me he was "ok" on the day the actual attending doctor got the worried look on his face.
This is the anxiety of every day. Everyday something new whistles or chimes and I am watching a different organ. I am watching his heart rate, his blood pressure, his temperature, his saturation or his respirations or everything at once. Then there are my "good catches', like when he was swelling in the neck and his one hand. When the ventilator valve was open when it wasn't supposed to be, when he moaned and shrugged the ventilator out and no one caught it. All these little quirks that could mean such a serious consequence for him are things THAT I CAUGHT. That my off the street Layman ass found - and you wonder why I fight Carmelo when he tries to get me to leave.
You wonder why I sit here and will only go to the bathroom if someone swears to stay in this room and physically watch him while I am gone.
I am paranoid and scared - and I need help. Please God. I beg you with everything I am, and on my knees - I BEG YOU - please keep your healing hand on Jason. He and I both need you at this time but Jason more than I. PLEASE.
I have been following your story and praying for you and your son. As a mother to a teenage son, I can feel every word you write. I find myself constantly checking your blog for updates on his condition and anxious to read good news. I had never heard of this disease but your situation has me researching the Internet. I strongly believe your strength, intelligence, and faith will bring Jason back, and I totally understand why you don't want to leave the hospital. When my dad was in the hospital I felt the same way. There were times that I (a teacher not nurse) would catch things that the professionals failed to notice. Some can be careless and heartless, and they forget why they became medical professionals-to help. They started moving their asses when they realized I began to document their stupidity through photos and videos, like when they gave my diabetic dad ice-cream and sweetened juice. God bless you both and I will continue to pray.
ReplyDeleteIn a sense your logs continue to help me get through this. It bothers me all the time I can't talk to Jason aka family that I get stuck looking into space with a depressed face. I will always keep praying for Jason. He's like a brother to me.
ReplyDelete